I am an attorney who works in the SSI/DI arena. When you apply for SSI don’t be discouraged if they turn you down, most people have to get to the third step in the process (the ALJ hearing) before they have a decent shot at winning their case. It is confusing and frustrating but hang in there. It would probably work to your benefit if you get turned down the first time to get a representative (these are attorneys and non attorneys) to work with you since they know the ins and outs of the system. Generally, you only have to pay them if you win your case. You may have to educate them and the judge about your condition, since its not very common. Anyway realize it isn’t a fast process but one worth pursuing.